Great info, Gwendolyn! Thank you for the education. I do agree that starting on a low dose of any type of nerve pain med & working up to a higher dose is the way to go so the body has time to adjust. You articulated that thought better than I would have so BG has some good information to consider.
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BG - I am sorry for this new symptom! Surgical recovery like aging “ain’t for sissies!” A separate thread would be great as it will allow new & seasoned members alike to have a more specific topic line to refer to i.e. rather than trying to find nerve pain med info under Scars, Surgery Recovery, CT Scans - Pics - an unlikely place for that sort of discussion! Good idea.
I totally agree w/ what Gwendolyn said and I had the same thoughts regarding your initial dose of Gabapentin before reading her post. Your doctor started you at a pretty high level. I’d ask about starting w/ 100 mg & working up to 300 mg. You may find 100 mg doesn’t work as well or at all but as you increase the dose, you should get the same results you’ve already noticed.
I also agree w/ Jules that your symptoms could be coming from a nerve being compressed/irritated by your swelling or that it’s just a part of your nerve healing process. I bet you’ll see that sharp pain subside as your swelling goes away more permanently & as more time passes.
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You did great with your response, lol. I was just going to reply about my own side effects and ended up writing a novel.
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Thanks for all the info! It’s xylitol which affects my stomach. I like the biotene gel but don’t find it lasts very long in my mouth, so like you I don’t go anywhere without water!
I will let you know if I find anything long lasting. I actually keep a few bottles of the mouthwash in different places, car, etc. At night I use a humidifier, but I still need water 
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Encouragement 3 or 4 months after both styloids are gone if your ES is bilateral is the beginning of a complete recovery. 3 or 4 months, we start to forget some of the pain, but twinge or setback stirs fear and anxiety.
Continue to manage and get therapy for muscles and joints. Get rid of trigger points. Work out TMJ and jaw joints. Any swelling or knot in neck or shoulder or back can make nerve pain worse or bring it back. Remember scar tissue exists internally as well as on skin.
Consider that eagles was caused by injury, inflammation, prior surgery or some sort of joint misalignment who knows, but work on the whole area. Be aware of it and self massage or whatever is best for you.
You will be surprised how one little tight spot that you did not realize was tight can make you suffer.
The little area between my earlobe and jaw are significant for me. Massage and pressure there regularly is helpful and the area is improving.
It has been 11 months since my last surgery and if I can stop being clumsy, I hope to have .my neck and shoulders cooperating, soon.
I am much better with mobility and flexibility, I need to rebuild proper muscle alignment. Left side and worst side surgery completed Sept 2018. Right side done March 2019, had complications
Ear pain almost gone, facial paralysis healed, chewing with bad jaw slightly better. Swallowing good, nothing feels stuck in throat, stomach much better, eye pain and floppy eye before surgery gone. Sleeping much better less pain. Sleeping lying down possible. Headaches still happen due to neck vertebrae impingement.
Now working on resolving neck and shoulder issues, which are improving and were not previously improving. Less anxiety, bone density improving. Gastro believes from better gut health and termination of acid reducing medications. Grateful to live in this time of 3 D technology and skilled surgeons. Praying for continued improvement for all Chronic pain sufferers.
The skin scars will be pretty faded in a year.
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I’m so glad you’re seeing improvement, emma! This has been a very long journey for you. May you feel God’s loving arms around & be aware of His guidance for you as you move forward in your healing process.
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Great email thank you so much for sharing this information with us Emma!
Thank you for the encouragement and insightful tips and reminders for the healing process. Its great to hear that you are well on your way to putting this all behind you.
BG
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Wow. Emma, such words of wisdom! You are soooooo right about those one little tight spots that can wreak havoc on everything else. I’m heading into surgery on my first side in about 6 weeks. I have all the issues you have and so nice to get this advice. I just started seeing an Osteopath who specializes in cranial-sacral manipulation. She has mentioned about working on the scar tissue and all the other concerns after surgery. I also get regular massage/OT/PT to manage my pain and neck/shoulder instability. Im curious if you and any others post-op continue to get any chiropractic adjustments? Thanks for sharing.
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I am still really sick but wanted to chime in. Emma, thank you. Your story has lifted my spirits. Like Snapple, I am going to have surgery (when I get better) - maybe same time frame as Snapple.
I really appreciate knowing that things do get better! It can be a bit of a dark time sometimes, your post is golden.
Snapple- I saw Dr. Jason Scoppa in Bellevue for cranial work. He is a chiropractor- no manipulations. He is really really really really awesome. Amazeballs. He knows his stuff. I am going to return to him after the surgery. I wish I could go now!
Xoxo to everyone. I hope to get better blood test results this week. I am feeling better - enough to reply! Hehe.
Gwen
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You do need to be wary with chiropractors as if they don’t understand ES they could do more damage. I’m sorry, I can’t remember who it was, but one member mentioned recently that Dr Samji cautioned against having any more chiropractor treatment after surgery, that it could do more harm.
Glad you’re feeling better! Let us know your blood test results…
I agree Jules. I actually stopped going to Dr. Scoppa because of the ES diagnosis. It has absolutely nothing to do with him, he is great. I am just being careful. I do miss him. He is very knowledgeable and really just wants to help in any way that he can.
I can’t have him accidentally setting off the ES. I should have mentioned that. I did go to him for TMJ help, and he was exceptionally careful.
But I completely agree.
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Regarding chiropractic care during & after ES - it is a mixed bag. The biggest issue is neck adjustments which can be done w/o the “neck snap” from side to side. A seasoned chiropractor can adjust the neck in a neutral position or by gently turning the head to the side & working the muscles/cervical spine w/o the usual aggressive approach.
I have been getting chiropractic care quite regularly since my ES surgeries in 2014/15 as I also have back issues. My neck is still a problem because a whiplash injury I sustained in 1979 left me w/ a cervical vertebra that rotates out of place on a regular basis. I have had “neck cracking” done, even post op from ES, w/o incident, but NO MORE! There is a risk of the vertebral artery being severed by that approach as well as further nerve disturbance in ES cases. Better to be safe than sorry. Only get neck work done by someone who can do it passively.
I also have TMJ issues & see a cranial chiropractor occasionally to help w/ jaw alignment.
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Yikes yes! I have never had a (non passive) neck adjustment, AKA where a chiropractor forcibly makes the neck crack.
Every person makes their own decisions about their care. Yet, they should be informed decisions.
“Neck Cracking” does have a severe risk of stroke, paralysis, and death. I remember reading a really great investigative article about this 10 years ago.
I agree 100% with Isaiah. The weight of your head can do the work and a PT or chiropractor can help you do this.
I don’t wish this to be a controversial issue: I simply encourage people to be aware and research prior to undergoing any treatments.
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Yes, I agree with much of everyone has said. Caution for sure. I have alot of neck instability and neck goes out in occipital area and quite painful (also from whiplash and Ehlers Danlos). The only thing that gets it back in place is chiropractic work which I have been getting for 40 years. This is why I ask others experience after surgery. Im hoping after surgery the nerve impingment and pain goes away so I can relax my neck and shoulders thus helping the neck instability. After severe pain event the neck and shoulders lock up due to tension from pain and it pulls it out of alignment. Ive found recently that any body work or PT on the neck can kick up the ES pain depending on the approach. Until surgery its hand off that side. Thanks everyone for the comments
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Just a thought here. Given your EDS and whiplash history it is very important that you rule out the possibility of CCI (craniocervical instability) before you allow anyone to perform a high velocity thrust manipulation to your neck. You are at a much higher risk for this type of instability and thus severe side effects to the surrounding vasculature which could be life threatening. Best to you.
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These testimonies and pictures have eased my anxiety so much! Thank you everyone! I wish I had found this support group months ago! Truly a Godsend.
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I highly discourage cracking neck manipulation, especially if there’s a possibility of a connective tissue disorder like EDS and/or Craniocervical instability. Eagle syndrome has been commonly observed in those with EDS and harsh neck manipulations has exacerbate symptoms. I had a cervical manipulation and although my facial pain temporarily was better the vascular symptoms became unbearable . Took months to resolve. Also, if you have weak dura or EDS, chiropractic manipulation can cause a tear resulting in a CSF leak. I am all for alternative medicine, but in my personal opinion, against cervical manipulation by cracking
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